14 Replies

We used to have the same problem with my dad, draining, bloody exhausting, he is now bed bound so no more!

Can you ask the hospice or GP or DN to start the chc process? Continuing healthcare, it's not means tested and would ensure all the care is paid for by the NHS! We now have this and have 2 x 4 carers 4 times a day every day!! Plus dn's every night! And we get 2 lots of respite weekly for 4 hours each time!

I know how your mum feels this was me a couple of months ago but things have changed and my mum is nearly bedbound now . Has your mum asked the GP to refer your dad to the community nurse team I have found that they are helping me the most at the minute and are in contact with social services who are now helping me get care package in place , they originally said means tested sort yourself but I just didn't know where to start.

Same advice as everyone else so far, get down to the GP asap and get the ball rolling. In the meantime, if your dad is anything like my mum then he is getting up at night to go the bathroom. We got our mum to initially wear incontinence pads during the day to prevent accidents and then a nappy at night. It is a big step and not easily done, it took quite a bit of convincing for the nappy. This enables my dad to get some sleep as he wasn't constantly getting up at night to aid mum so she wouldn't fall. The risk of falling at night was very high because she was also barely sleeping. Ask the GP for an incontinence nurse referral if he is getting up so much at night. The incontinence pads etc can be bought at Asda or Tesco. Our referral to the incontinence nurse took over 3 months we couldn't wait that long.

First step GP and tell them dad is just not coping, need help now. All the best.

Thank you all - I have been trying to convince my parents to try the pull up type pads at night. My mum doesn't help herself really, she's so stubborn and says seems to think they won't help!! She thinks my dad will still get up out of bed because he's not really thinking, he'll forget he's got the pad on!! I've told her to at least try the pads.

I am hoping a DN is coming out today to see them - do they help quite a bit then?

My mother in law is the same and the pull up pads do not work, it is their mind telling them they have to get up and then anxiety sets in if you dont do what they want.....please get her help. Your mom sounds like my mom they think if they admit defeat they lost the battle....I get you I live it every day

Your situation sounds exactly like mine was a few weeks ago. Parents VERY similar! In desperation, I phoned the GP's surgery, asked for one of the partners, and asked who was the named GP for my dad, who could I hold responsible for answers that we weren't getting? Within one day, he'd been referred to the hospice, which has proven to be the best thing EVER. This is despite already having had several conversations with doctors at the same practice who told me to just organise private care as there was nothing they could do. The team of nurses at the hospice are amazing and will help with anything, plus they can be an added voice if you head towards a CHC assessment. Dad got a 12 week referral, one day each week and he really loves it. It just about helps to keep mom sane, but she is still struggling the other 6 days/week, so we need to start thinking about something else now. Dad's condition didn't even trigger a CHC assessment, because he can still eat. He can't do anything else, but because he can still chew, apparently all his other needs are social, so she's on her own with him. It's rubbish, it really is. Also, my dad's neuro nurse was very helpful, so you could try talking to yours directly perhaps - they tend to be more useful than the docs.

Hi ask the DN to refer them to Marie Curie nurses they can provide overnight care so your mum can try and get some sleep. They sometimes can provide daycare but it is "hens teeth" so very intermittent and irregular.

Hi, like everyone else, I really feel for you, but your Mum especially. As the saying goes,I have the Tee-shirt, earnt the hard way.

You must get help. GP is probably a good place to start, get Dad referred to the local hospice ASAP, if they are not already involved. They are there to help people with life limiting diseases to LIVE! Obviously you must get to see the Bladder and Bowel team. This is a problem that will not go away. I have read your second post, about not accepting pads. I would skip them all together, go straight for a convene. This is like a condom with a bag attached to catch the urine. If you can get them to work, they are life changers. My husband couldn't get on with them. Now he has a permanent Catether fitted. Best thing I have ever done.

I know all this sounds dreadful. But so is getting up 10 times a night, constantly mopping the floor, because he doesn't get there in time. The never ending washing and changing of sheets. Not being able to go out, because of the toilet problem. Make no mistake, this is a nightmare, but one with a solution, if you take the bull by the horns and accept it.

Like everything else with the NHS, they will only respond to a crisis. Make sure your Dad's GP knows that is looming very fast and your Mum needs a solution TODAY!!! They will help eventually, when that penny drops.

For me, sorting out night-time has given us a new lease of life. Broken nights make it hard to think clearly.

We use the convene described by Heady. Not perfect but we manage.

The next essential for me is respite so I can have time away. He goes to a hospice 1 day a week. I pay for 4 hours break once a week. Every 6 months I have a weeks respite and will pay for other respite. I can manage the rest at present.